Hi Dr. Mark,
I have a theory question.
I stopped by here last year, very ill after starting thyroxine-TSH 200. Symptoms were salt wasting and excessive urination leading to joint/muscle pain, headaches, nausea, blue numb
handsHand or foot spasms
Hand tremor and feet and eventually bouts of
deliriumDelirium
Delirium tremens when I drank water or electrolytes. 3 endos all agree that it looked
adrenalAddison’s disease
Adrenal gland biopsy
Adrenalectomy
Catecholamines - blood but
adrenalAddison’s disease
Adrenal gland biopsy
Adrenalectomy
Catecholamines - blood tests were all normal. No one has any answers. I got better after taking
florinefFlorinef acetate when starting the
synthroid and rapidly improved. Another lady also posted on the board with the exact same set of symptoms.
Importantly-no pretreatment edema at all- likely due to the protective effects of a collagen disorder (EDS III). Reduced interstitial space I believe thus much less water and poly saccaride buildup. see through skin, reduced skin thickness and so on.
I think my brain thought it needed to dump water and salt due to the sudden drop in TSH but my body didn’t have any water to drop. Thus diabetes insipidus like symptoms, extreme dehydration and salt loss.
A paper-by george choreoas at the NIH-discusses the role ADH plays in modulating ACTH production in the pit along with CRH. Could it be that some of the mild AI symptoms people show up here with are due to drops in ADH upon TSH normalizing which then trigger drops in ACTH? There is no adrenal problem but there are mild adrenal like symptoms.
What do you think?
Endocrinology. 1998 Feb;139(2):437-40. Review. No abstract available.
PMID: 9449607 [PubMed - indexed for MEDLINE]
Sorry, here's that ref. It's pretty old but when I stumbled across it it made me rethink my med combination substantially as well as all the problems I had been having.
Also, remember Ar who got orthostatic hypotension after large doses of cortisol and florinef wasn't helping much? Something like that happened to me as well later on due to a very small 5 mg dose of cortisol. Perhaps the same type of problem?
1) A very skinny person who is substantially hypo. I had a TSH of 200. My mother was at TSH of 120 when diagnosed. We seem to have a genetic protective factor of some sort that prevents the majority of edema associated with hypo. There was some-my hearing was bad and my face was puffy-but none at all in my arms, legs or torso. Likely this is a collegen disorder which causes joint hyperflexibility and reduced interstitial spaces under the skin due to disorganization of the collegen structure. (EDS type III). My body tried to retain the water/polysaccharide/salt mix that most hypos have but didn¡¦t have anyplace to put it. Taking small amounts of synthroid-25 ug-caused massive dilute urination, headaches, weakness, nausea, blue arms and legs and eventual delirium. Extreme salt cravings. I found a nephrology paper which did show drops in ADH upon treatment of profound hypo-TSH of 100 or so but noted many studies had been inconclusive.
I figure my body dumped water and salt when it didn¡¦t really need to. My brain was too dumb to listen to my body likely due to the extremity of the hypo situation. Just taking florinef-100 ug a day- helped keep in the water and the salt cause for every molecule of salt you have to keep a molecule of water. A lady named Becky a long time ago had this happen to her as well so I don¡¦t think I am alone here.
2) Apparent symptoms of Adrenal insufficiency while taking large or small doses of cortisol. A lady named Ar came here after taking five days of 70 mg cortisol a day. She developed low blood pressure, nausea, and felt really horrible for about four months until it slowly got better. Florinef helped a little but didn¡¦t raise her blood pressure they way you would expect it to normally. It isn¡¦t really AI because it should have happened after stopping the cortisol not while taking it.
I (idiotically) tried taking a boving adrenal extract last summer-likely about 5 mg of cortisol. After four days I began to get very lightheaded with rounds of ¡§wooziness¡¨. I stopped the extract and the next day began running a fever, lay on the floor with a very rapid heartrate, with waves of nausea and lightheadedness due to plummets in blood pressure. I started a weaning dose of prednisone-20 down to 0.25 mg over about ten days. The acute AI symptoms went away but the rounds of afternoon nausea and lightheadedness did not. Over six weeks it got worse and worse. I couldn¡¦t stand up after noon and I couldn¡¦t eat or sleep. Extreme stomach inflammation, gastric reflux, apparent gall bladder pain, blood pooling in my extremities, and drops of BP from 120/80 to 80/40. Insomnia at night due to cortisol spikes and gradually over the course of several weeks development of mild psychosis and seizure like twitches. Continually decline. Continual increase of florinef in an attempt to raise BP. 1 mg of Cortisol would relieve the acute symptoms but then I would be in bed all day unable to stand up as it made the chronic problem worse.
Suicidal at this point but still trying to find an answer I stumbled across the above paper. It was illogical to me at first and then I realized that potentially I had a messed up cycling of the ADH-CRH-cortisol loop with the adrenal extract due to my special-ed endocrine system. I realized the florinef might be suppressing the ADH side as florinef causes some retention of water in the molecular sense. I weaned off the florinef, became very thirsty, my urine became very concentrated, and my BP rose back up to normal. I began retaining water, mostly in the soles of my feet within hours of weaning the dose down and the above problems all ceased. I think this is indicative of an ADH increase thus perhaps for folks like myself and Ar, treating with a weaning ADH dose may be a better answer than florinf or cortisol.
DON¡¦T TAKE ADRENAL EXTRACTS PLEASE.
3) I have heard from many, many people that they had mild adrenal like problems when starting thyroid hormone replacement and eventually they founds docs who put them on cortef and they got better. Perhaps a disruption of ADH levels due to the water loss upon thyroid treatment is enough to disrupt the ADH-CRH-ACTH loop. It isn¡¦t severe enough to kill you but makes you uncomfortable. Perhaps treating with an ADH replacement is a better idea than the cortisol which could substantially disrupt the loop even more.
ADH Mediated Central Adrenal Fatigue-ADHMCAF (he¡Khe¡K.he¡K ƒº )
First, are you saying that no one should take adrenal extracts, or just those with similar conditions?
Are you also saying that physiologic doses of hydrocortisone are not appropriate, or just that within the adrenal extracts?
Is this a feedback loop you're referring to? Please expand...in layman's terms simple enough for a hypobrain! :)
Thanks!
I think the cortisol extracts may be okay for many people but when you hang around some of the adrenal groups on the web long enough you'll find people do some crazy stuff. One guy would take 60 mg of prednisone for 1 month then stop abruptly in an attempt to combat chronic fatigue. That would kill many people.
So it's the same idea with the cortisol or extracts. They likely work okay for many-most people but the worry is that the more "off" and unstable your endocrine system is the more likely you might make yourself really ill by taking them. So us folks who have the adrenal symptoms may be the ones most likely to get ill by taking even small doses of adrenal extracts. I am so happy that you guys are all doing well on the extracts but I just urge being very careful if you chose to go in that direction. Endos are really not helpful here because we are outliers from a health perspective. There are not many of us that present with these symptoms and they don't always know what to do about it.
Sorry I got a little technical in the above post! I am guessing you know that your brain releases CRH (cortisol releasing hormone)in the hypothalumus. That goes down to the pituatary and causes ACTH to be released. Then that goes to your adrenal gland to stimulate cortisol production. So according to traditional views-the stuff your endo knows-if there is a problem it is in that pathway somewhere.
There is a ton of work indicating that irregularities in the HPA axis (the above pathway) can cause depression and chronic fatigue symptoms and from talking with many folks here it seems that this crosses into more standrard endocrinology in the adrenal fatigue problems that arise after treating other endocrine problems.
I spent months looking at the above pathway in terms of what was wrong with me and many of you guys and it was likepieces were missing. It just didn't add up so cleanly. Then I found the papere in the original link-it's a free download if you follow the links.
It appears that ACTH release is also controlled by ADH (antidiuretic hormone)/AVP (arginine vasopressine). This little hormone, according to endos, controls how much water your body keeps in. read about diabetes insipidus or SIADH as those are the standard disorders endos run into involving ADH.
But the paper says it also plays a role in regulating ACTH production thus adding a whole extra-complicated-addition to how cortisol secretion is controlled. Most endos don't even know the pathway exists so are not in a position to understand how it might effect the HPA axis. They don't really have time to think like scientists as they are kept really busy with pateints due to the shortage of endos nationwide.
Most of the time the role of ADH is pretty silent. Obvious problems have been found at all points in the CRH-ACTH-cortisol pathway but I don't think it is until your system is really messed up that you might see the role ADH is playing in coregulation. Like some of us here!